Well, it has been a long three weeks! I’ve owed an update for a while, and a lot has happened since the last post. In brief: We got our referral to the University of Colorado Cancer Center in Denver,...
Well, it has been a long three weeks! I’ve owed an update for a while, and a lot has happened since the last post. In brief:
We got our referral to the University of Colorado Cancer Center in Denver, and met with both a neuroradiologist and neuro-oncologist. It was an excellent meeting, and I have a lot of confidence in both doctors. The neuro-oncologist recommended trying a different type of chemotherapy, one called PCV, that has a long and well-established track record of preventing brain tumor recurrence. This type of chemotherapy, consisting of Procarbazine, CCNU (Lomustine), and Vincristine, is also highly toxic and normally makes the patient absolutely miserable. I won’t be doing Vincristine, and the other two can be taken orally, so one of the good things is that I should be able to do all of my chemo at home.
One of the other interesting things the neuro-oncologist recommended was electromagnetic field therapy, a very new treatment that will hopefully take the place of radiation, called Optune. I encourage you to look at the website, or Google, but it’s a fascinating treatment that actually creates an electromagnetic field inside the patient’s head, creating a situation where when a malignant cell tries to replicate, instead of multiplying, it dies. There are no real side effects, which is great news, but they recommend the treatment a minimum of 18 hours a day for two years. That means I’ll wear the device while I am sleeping, working, driving, and yes, running. I also have to keep my head shaved, but the first side effect of Procarbazine is hair loss, so I might not have to worry about that.
So, we were already to start chemo last Monday, when we ran into a little snag…
Last Saturday the 28th, after my regular long run, by dinner my face was showing considerable swelling, even to the point of one of my eyes almost swelling shut. Straight to the ER! The ER doctor was good, but assumed it was an infection, gave me 30 minutes of IV antibiotics, and sent me home with amoxicillin. The labs and the CT didn’t show any sign of infection, but I was okay with that plan and started the antibiotics that night. Unfortunately, by the time I woke up on Sunday morning, my face has doubled in size, with now both eyes swollen shut, difficulty breathing through my nose, ringing in my ears, and a terrible headache.
Back to the ER…
The second ER doc was very good, and he immediately ruled out infection with another CT
and labs. He admitted that it wasn’t an infection but that he didn’t know what it was, and couldn’t in good conscience discharge me without knowing what was causing the swelling. He called the on-call neurosurgeon, and after about six hours in the emergency room the neurosurgeon was able to conclude that I had a cerebral spinal fluid leak. This is serious business…untreated, it’s even potentially fatal, or can result in meningitis or hydrocephalus. While going over medical history, I admitted to the doctor that I had not waited the recommended 4 to 6 weeks before strenuous exercise after surgery. In fact, I didn’t even make it two weeks, getting back into my 13 to 15 mile long run routine just 11 days after surgery. It now seems clear that my aggressiveness (exercise addiction? Stubbornness?) likely ruptured some of the internal repairs done after surgery, allowing the cerebrospinal fluid to leak out of the skull and into the open area around the eyes and the sinus. Too far, too fast, too soon…I ignored the doctor’s orders and I definitely paid the price. One slice of that pie, please. Large slice.
Today, I’ve mostly recovered from the CSF leak, and the biggest issue is my attitude after almost 2 weeks without exercise. I still have a little bit of redness and swelling near the incision, but I am much, much better than I was last weekend. I have about five more days on another course of antibiotics to get rid of any potential infections, and I’ll start chemotherapy on Monday the 13th. I will then follow up with the neurosurgeon on the 14th, and with the neuro-oncologist on the 22nd. For those following our diet adventures, we will also meet with an oncology dietitian on the 22nd to see how ketogenesis will work into the chemotherapy plan. Procarbazine already has its own long list of dietary restrictions (see here), so we may have to put our ketogenic plans on hold until we are done with chemotherapy.
To be honest, it has been a few of the worst weeks in my almost 18-year battle with brain cancer. The pain and discomfort of the CSF leak, the inability to exercise, and the anxiety and apprehension that goes with re-starting chemotherapy have all combined to put stress at an all-time high. We will persevere — a firm faith, an amazing family to support me, and (in five days) a recovery plan centered on fitness!